Advertisement

Why can it be so difficult to live with chronic ASMD?

Living with chronic acid sphingomyelinase deficiency (ASMD) can be tough. It can be hard to keep up with friends if people are feeling tired. They might always feel like they need a nap, and it may be hard explaining to friends that they can't hang out because they have to go to the hospital—again.

It’s hard, too, having to spend a lot of time in the hospital. Being a little different from friends can make people feel like a bit of an outsider, but remember it’s what people are like on the inside that counts. Chronic ASMD is really rare so people might not know anyone else who is going through the same things as they are, but they need to remember they are not alone! Talking to their family, friends, and hospital team can really help.

Continue Learning about Genetic Disorders

Caregiving for A Young Adult with SMA
Caregiving for A Young Adult with SMA
Spinal muscular atrophy (SMA) is a disease that causes muscles to weaken and atrophy. There are different types, some of which are diagnosed at birth ...
Read More
What is the Treatment for Spinal Muscular Atrophy?
What is the Treatment for Spinal Muscular Atrophy?
Spinal muscular atrophy (SMA) is the name given to a collection of rare genetic disorders that affect motor neurons. Motor neurons are located in the ...
Read More
Coping with the Emotional Impact of SMA
Coping with the Emotional Impact of SMA
Spinal muscular atrophy (SMA) is the name given to a collection of rare genetic disorders that cause muscles to weaken and atrophy. SMA is a lifelong...
Read More
Choosing a College or University When You Have SMA
Choosing a College or University When You Have SMA
Decisions about education are challenging for everyone. But when you or a loved one is living with a condition like spinal muscular atrophy (SMA), dec...
Read More

Important: This content reflects information from various individuals and organizations and may offer alternative or opposing points of view. It should not be used for medical advice, diagnosis or treatment. As always, you should consult with your healthcare provider about your specific health needs.